Ethical and Privacy Protective Academic Research and Corporate Data

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Is edtech helping or hindering student education?  What effect does social media have on elections? What types of user interfaces help users manage privacy settings?  Can the data collected by wearables inform health care?  In almost every area of science, academic researchers are seeking access to personal data held by companies to advance their work.

Data held by companies holds the potential to unlock new scientific insights that can benefit society and expand human knowledge. When responsibly shared with academic researchers, this data can support progress in medicine and public health, education, social science, and many other fields.

But access to the data needed is often unavailable due to a range of barriers – including the need to protect privacy, address commercial concerns, maintain ethical standards, and comply with legal obligations.

To help companies tackle these challenges, the Future of Privacy Forum has launched the Corporate-Academic Data Stewardship Research Alliance, a peer-to-peer network of private companies who share the goal of facilitating privacy-protective data sharing between businesses and academic researchers.

The work of the Alliance builds upon the 2017 FPF report, Understanding Corporate Data Sharing Decisions: Practices, Challenges, and Opportunities for Sharing Corporate Data with Researchers. Grants from the Alfred P. Sloan Foundation allowed the FPF Education and Innovation Foundation to undertake both projects.

The Alliance will support data sharing efforts under way, help address and mitigate challenges that create barriers to sharing and promote practices that encourage more data sharing between industry and academic researchers. So far, more than 25 prominent companies are participating in the Alliance’s activities.

In its initial work, the Alliance has identified a number of existing barriers to data sharing and has begun to address potential solutions that support compliance with legal, policy and ethical concerns.

Alliance participants agree on the need for a common understanding of the legal landscape with regard to sharing personal information with researchers. In response, the Alliance is producing an overview of how the use and sharing of personal information for research purposes is treated in key privacy laws, as well as a paper that analyzes the legal landscape and argues that lawmakers should continue to make allowances for scientific research when drafting future privacy laws.

The Alliance has also begun work on establishing a set of best practices for sharing data for research purposes.  Those best practices include data security, de-identification, vendor management, due diligence, training and education, and more. This work will likely result in a guidance document or an industry Code of Conduct.

A major barrier to data sharing identified by the participants is the lack of contractual uniformity. Research institutions, some of which are subject to state procurement rules, may require their own contractual terms. This creates scaling issues, in which the company must negotiate with each institution separately. Additionally, companies want to ensure that the contracts include provisions that address and reduce the risks (privacy, security, etc.) inherent in data sharing. Going forward, the Alliance will gather or develop model contractual terms or template agreements that all parties can agree to, with the goal of easing the negotiation process and ensuring that appropriate protections for all parties, including data subjects, are included in the written agreements.

The lack of access to an Institutional Review Board (IRB) or ethics review board is another roadblock for companies. Some companies have expressed a preference for an independent third-party that could review a range of privacy and ethical issues that go beyond what a traditional IRB might address. The Alliance will support efforts to develop effective options for independent review of data sharing and the related research purposes.

To encourage privacy protective data sharing for scientific research, the Alliance will create a new Award for Leadership in Data Stewardship and Achievement in Academic Research.

The Alliance welcomes industry participants to join our monthly calls and contribute to our work.  If you are interested in learning more about the Alliance, please contact FPF Senior Fellow Mike Hintze at [email protected].